What was the “Ice Bucket Challenge” all about?

This post is part of a series of guest posts on GPS by the graduate students in my Psychopathology course. As part of their work for the course, each student had to demonstrate mastery of the skill of “Educating the Public about Mental Health.” To that end, each student has to prepare two 1,000ish word posts on a particular class of mental disorders.

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What was the “Ice Bucket Challenge” all about? by Angela Wernke

In 2015 a popular activity called the Ice Bucket Challenge (IBC) was trending heavily on social media. The IBC had good purpose with a goal of helping fund research and recovery for those suffering from a neurocognitive disorder called Amyotrophic Lateral Sclerosis (ALS). The challenge was to dump a bucket of ice cold water over your head and then log in to a website and donate any amount of money to the research fund. Many people participated and challenged their friends to participate to raise awareness about ALS. Some donated, most only dumped water on their heads, but either way the awareness or recognition was made. Fun was had, enormous amounts of ice were wasted, but how many people actually understood the cause they were supporting? For those interested in ALS, what it is, where it came from, how it is treated and it’s relation to neurocognitive disorders, this post is for you.

Amyotrophic Lateral Sclerosis is a progressive neurodegenerative disease that impacts nerve cells in the brain and spinal cord. Amyotrophic is derived from Greek words meaning ‘no muscle nourishment’. Lateral describes the area in the spine where the brain tells the muscles what to do. Sclerosis means hardening, as the disease progresses the lateral nerves harden causing lost signals to the muscles. This disease is diagnosed between the ages of 40-70 years of age and approximately 20,000 Americans are living with it currently. There is no cure.

There are two types of ALS currently diagnosed – sporadic and familial. Sporadic, the most common, makes up approximately 90–95% of all cases and may affect anyone, anywhere. Familial type accounts for 5-10% of all cases in the United States and represents the inherited version of the disease. There is a 50 percent chance with familial ALS that offspring will inherit the gene mutation and may develop the disease. This disease often has a high comorbidity rate; so much so, that recent studies suggest up to 50% of ALS patients demonstrate mild to moderate cognitive and/or behavioral impairment resulting in Frontal Temporal Dementia (FTD). With up to 20% of ALS patients meeting criteria for the full-blown dementia syndrome, the need for continuing research on this issue is imperative.

Dementia is described as a condition in which a person has significant impairment of thinking or behavior, that reflects a decline in the level at which that person has always functioned. Frontal Temporal Dementia primarily affects the frontal and temporal lobes of the brain, the areas generally associated with personality, behavior and language. Dementia, as discussed in the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-5), first requires the terms for a major or mild neurocognitive disorder (NCD). In addition, two more criteria are required to to meet the Frontotemporal NCD. First, the disturbance has insidious onset and gradual progression. Second, a behavioral or language variation from the norm must be present. There is also a stipulation that requires no evidence of a genetic mutation which may rule out some of the familial ALS patients.

Symptoms of Dementia vary and are commonly overlapped with those related to Alzheimer’s disease (AD). Those diagnosed with Dementia usually have trouble with short term memory and functioning, such as paying bills, planning or cooking a meal, or keeping track of a daily schedule or routine. Generally Dementias are slowly progressive and continue to get worse over time. There is current research being conducted to determine risk factors of Dementia besides the genetic and age aspects. Researchers are investigating the links between cardiovascular health, physical fitness and diet as early determinants of risk factors.

Some of the most commonly documented signs of cognitive and/or behavioral impairment in ALS are found in the domain of executive functioning which encompasses judgment, regulating emotions and sequencing. When executive function is impaired, individuals sometimes demonstrate behaviors reflecting absence of social norms such as social withdrawal, indifference, and lack of motivation or of following through with instruction, along with a lack of empathy or understanding for others. Cognitive impairment in ALS presents through disturbances in speech, language and comprehension capabilities. Individuals can experience the lack of language to the extent that there is a loss of words meanings and recognition of the words themselves.

FTD also tends to occur at a younger age than Alzheimer’s disease, with presentation as early as age 40 and continuing through 75 where AD is normally diagnosed after age 60. Presentation and diagnosis are difficult according to most studies as the symptoms are similar to Dementia but include physical domains as well. Diagnosing cognitive and behavioral impairment in ALS encompasses a comprehensive neuropsychological evaluation including standardized measures allowing for speech and writing impairments. FTD causes the frontal and temporal lobes to shrink resulting in loss of functioning and irregular protein disbursement. The highest risk factor for FTD is having a family history of Dementia.

There is no cure for Dementia or ALS. Treatments for the symptoms related to these diseases are available. Vitamin E and cholinesterase inhibitors are used to lessen the severity of the cognitive impairment including memory loss, confusion and problems with thinking. The behavioral changes available consist of learning triggers, understanding coping mechanisms and using patience in working with the patient. Cognitive Behavioral Therapy is a positive option for reducing anxiety, stress, depression and agitation in patients. Currently, with no known cure, the goal of treatment is to manage the symptoms of those affected.

Communication is a key factor with a diagnosis involving cognitive and behavioral impairments such as Dementia and FTD. Education about the disease, survival, and adherence are important facts for both the family and providers. Important information must be understood by all caregivers and the best care is available to those that work as a team. Caregivers need to know how to set appropriate expectations for the patient, this includes an understanding of knowing when to encourage the patient to do more for themselves along with knowing when others need to step in and act on the patient’s behalf. There are many ways caregivers can assist in improving the behaviors of the patient that include; using straight forward language, speaking clearly and concisely, supervising eating and walking, not taking their behaviors personally and providing a positive caring environment.